Why Would I Lie?

As I am writing this, it is 82 degrees in our house and 2am. I just turned the AC to the disappointment of the husband, but Luke has a fever as of an hour ago. I say it is time. So awake I am while I monitor a warm baby and thought I would update a little.

We are finally settled into our new house and I think Luke likes it. He really can't tell us, but if he could I think he would say so. He now has two bedrooms due to all of his things he accumulated. He isn't spoiled or anything..cough cough. Today he spent most of the afternoon with his Gammy while Jonathin and I (mostly Jonathin) cut down 5 or so trees from our backyard. They were overgrown things probably from the 70's when the house was built. Now the yard looks to much better and bigger. I can already see the swing set in the next year or so. Next on the list is ripping out all the landscaping around the house.

Luke seemed to have a good day according to my mom. We are slowly working on a sippy cup to take juice. I would like to get a lot more fluids in him, but once again that can be a struggle. I'm hoping it isn't a preemie thing, but in the back of my mind I know it is. He doesn't like the big sippy cups and will take the small flat mouth pieces that go on a bottle we have. Hopefully today when his OT is here we can ask her some advise since she does do feeding assistance also. We had a little hiccup with his feeding when we did all the moving, but I think we are ironing that out now.

Now since Luke goes out more a lot more people want to "look at the baby." I've noticed and here lately we have been explaining a lot more about him. Don't think I don't like talking about my son, I mean come on I am a mom and he is ONE SPECIAL KID. I just can't get over the people that look at me like I am trying to pull a fast one on them. Honestly who would lie about their kid being a preemie? I would not wish this upon anyone. It is a very special club we joined last June, but not by choice. This one lady at Lowes yesterday just stared at me when I said he was a pound. Of course I forgot the 2/3 ounce, but I mean really. She just kept looking at me like I was from another planet. Yes Lady, there are miracle babies all around you. It's funny when you say preemie and everyone just assumes he was 4 pounds and in the hospital for a few extra days. I just smile at them and give them just a touch of our past year. But still, even if you are around Luke often you still don't know the half of it. Our little struggles that we go through daily. He seems "normal" now, but we have our struggles daily and our lists to accomplish everyday.

1. 18-24 ounces of formula daily - happens once in a blue moon.
2. 1 jar of meat daily - depends on his mood.
3. A lot of tummy time - let's be honest, how would you feel about refusing your child from rolling over and him crying nonstop and screaming as he throws his body around for long periods of time as you are told just ignore that part?
4. Work on getting any fluids in him as you can.
5. The on going poop issue - did he go today? Did he struggle?
6. Constantly asking if that was a cough you heard?
7. Adding butter to everything he eats.
8. Watching him lay everywhere, because he still can't sit at 11 months.
9. Stretching his hamstrings with diaper changes to the point he cries as you lift his legs....to help with sitting.
10. The wondering why Luke doesn't have a tooth yet?

These are just some things. Then you add on watching and hearing how it seems every other child around you is doing some amazing thing and others asking you why your child isn't doing it to. Simple...he is behind. That is all, and we except that. We work daily with him and believe me it doesn't stop him from being happy. No matter the anguish we feel daily with everything, I know I still have a toothless smile coming my way when I smile at him.

This morning I was asked for a couple pictures from a good family friend of Luke. She has some friends that just gave birth to preemie twins. She asked to give them a little hope for their situation. Who would have guessed that after everything, we can help others with just a picture of our Superman. I realize that I do that also while reading other blogs some days. I know with all of our struggles Luke go through I have hope to see him catch up and pass everyone's expectations. I mean look at all he has accomplished so far.

1. Living after only being given a 20% chance of survival
2. Coming home 2 days before his due date
3. Gaining 13 pounds!
4. Completely clear from oxygen and monitors
5. No feeding tube, and loving food

These are just a few things on that list. Everyday he does something that he should haven't done just by  being here. So, why would I lie about my amazing son, when I can talk about all he has done so far. As Luke's first birthday quickly approaches, I am letting myself feel more about what has actually happened the past year. I realize that even though I cried and cried when they told me he was coming early, I never let myself think things would end badly. I never would let myself think that we could loose him and how things could have been. Now, I see how it could have been and it overwhelms me sometimes when I look at him. I am finally letting myself feel some things that I build a wall up to prevent. I know on June 12, I will cry, but smile more. I thought I would put up some pictures, for some hope.

5 Days old, beating the odds

First time Mommy got to hold his hand at 2 days old.

Waited over 2 months for this...

Birthday!

Coming home from Riley.

Just a day at home with the oxygen tube.

Last day with oxygen.

No words...

First outfit at 2 months old and now 9 months old

2 miracles and 2 friends, even if they don't know it yet.

Sitting with assistance